在基于人口的研究中披露帕金森病风险的偏好
Philipp Mahlknecht1, Simon Leiter1, Corinne Horlings1
1Department of Neurology, Medical University of Innsbruck, Innsbruck, Austria.
Movement disorders clinical practice
|November 19, 2024
概括
大多数人想知道他们患帕金森病 (PD) 的风险,并有动力采取更健康的生活方式. 参与者还表示有兴趣参加未来的疾病修饰临床试验.
科学领域:
- 神经科学是一个神经科学.
- 遗传学 是一个遗传学.
- 流行病学 流行病学
背景情况:
- 关于参与者在人口研究中披露帕金森病 (PD) 风险的偏好存在有限的数据.
- 了解这些偏好对于神经退行性疾病研究中的伦理和有效风险沟通至关重要.
研究的目的:
- 调查参与者关于披露他们患帕金森病 (PD) 的个人风险的偏好.
- 评估风险披露后对生活方式变化和临床试验参与的态度.
主要方法:
- 在欧洲健康大脑衰老 (HeBA) 多中心研究中进行了一项试点研究.
- 参与者 (≥50岁,没有神经退行性疾病) 接受了远程PD风险评估,并在面对面访问期间填写了关于风险披露偏好的结构化问卷.
主要成果:
- 81名参与者的绝大多数 (79%) 希望无条件披露他们的PD风险.
- 大多数参与者表示,如果被告知有积极的,特定的PD风险,他们会采取更健康的生活方式.
- 66%的人表示愿意参加未来的安慰剂控制疾病修饰试验.
结论:
- 参与者表现出对收到有关他们未来患PD风险的信息的开放态度.
- 个体表现出积极主动地管理其健康风险,包括改变生活方式和参与试验.
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